Geneticist He Jiankui claims to have altered the genes of twin girls born this month. He Jiankui presented his work in a forum organized by the University of Hong Kong to discuss human embryo editing.
The highlights are
* the work was thorough
* the consent was done
* the actual genetic change cost component is trivial and most of the cost in this case and for any future genetic modification would be in the multiple genetic tests and screening. It is likely that if this were done routinely all costs would come down. Cost will not be a limiting factor in the developed world.
* the families made the informed decision to use the genetically modified babies
* Geneticist He Jiankui has a personal, ethical and compassionate reason for performing this work. Others can reasonably disagree. It has been put forward that there are alternatives to genetic HIV immunity. There can be sperm washing to enable a safe HIV-free baby. The counter argument is how safe the child will be living with an HIV infected person. The statistic claimed is that there 0.5 to 2.0% chance of transmission after the child is born.
* Embryo selection with genetic screening is an alternative in some cases. However, this is not possible if neither parent has a recessive gene.
Father of the Baby Girls is HIV Positive and Desperately Wanted Them to Be HIV Immune
Geneticist He Jiankui also had personal experience with HIV. He came from a village with 30% HIV infection rates. Parents had to donate children to relatives in other locations in order to prevent HIV transmission.
All of the volunteers had educated backgrounds and were familiar with HIV. All fathers had HIV infections. They were in a community social group who shared knowledge about HIV. They were familiar with the science and pros and cons. There was a one hour and ten-minute pre-informed consent discussion. They were well educated and could read and understand the material. The 21-page informed consent was gone through line by line and paragraph by paragraph. There were two other observers. They were given two rounds of informed consent. The first was informal. The second was personally performed by He Jiankui.
The project had about 30 families. Some dropped out. There are about 20+ embryos created. There is one more woman who is in the early stage of pregnancy. The program has been paused. Geneticist He Jiankui is currently suspended.
Physicist and Genetics expert Stephen Hsu describes the situation at his blog Infoproc:
At one hour and 25 minutes into the video He JianKu claims that the parents were given the option to use unedited embryos for their pregnancy but chose to use the edited ones. This decision was made even after being informed of the existence of a possible off-target edit in an inter-genic region. The possible off-target was not confirmed by later analysis. If true, this has some important ethical implications. The problem becomes one of parental choice and reproductive freedom. IIUC, the father has rather strong feelings concerning HIV (being HIV positive) and the parents strongly desired HIV-resistance in their daughters. Who are we or anyone else to tell the parents whether to use the edited or unedited embryos?
Stephen Hsu Describes Simple Genetic Screening And Embyro Selection is an Existing Alternative
Gene-editing using CRISPR, not a technical breakthrough — it has been possible for some time. What is new is that someone had the audacity to push it to completion with human embryos. Some researchers who attended He’s talk a few months ago at Cold Spring Harbor (the talk covered methodology but with no hint that real babies would be produced) found it sound but unremarkable.
In the near term most applications of CRISPR in IVF can already be accomplished simply by screening (genetic testing) against the undesirable genetic variant. No need to edit, just select one of the embryos without the variant.
With CRISPR one can potentially edit IN new genetic variants that neither parent has. This “enhancement” is much more ethically questionable, but may eventually happen. However it can only be done with simple single-gene conditions.
Eventually we may have the technology to do hundreds of edits at a time, which will allow modification of polygenic traits. Most traits are controlled by many genes.